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Atypical lobular hyperplasia: Did you have surgery?

Posted by delormv @delormv, Aug 29, 2022

August 2021, I was diagnosed with invasive DCIS in my left breast. I underwent a lumpectomy, chemo, and radiation. I am currently on Anastrozole. August 2022, ALH was incidentally found in my right breast after a biopsy was performed due to microcalcifications found on a mammogram. My surgical oncologist stated that ALH does not need to be surgically removed since it is not cancer. Has anyone else been diagnosed with ALH and not had it removed? Have others had theirs removed? Thank you 🙏

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toomanyquestions | @toomanyquestions | Dec 24, 2022

I had ADH in 2003. It was found due to micro calcifications. It was removed with clean margins and I was put on Tamoxifen 5 years then Raloxifene 7 years. I was wAtched high risk and 20 years later had DCIS twice. I Finally had mastectomy.
I would get another opinion regarding leaving it.

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Nanny23 | @nanny23 | Dec 24, 2022
In reply to @nanny23 "Mine turned into full blown breast cancer because my doctor left it there. He said he..." + (show)
@nanny23

Mine turned into full blown breast cancer because my doctor left it there. He said he was going to watch it monitor it. Three years later was breast cancer lobular aggressive cancer. I pound up getting a double mastectomy and implants. They found a different kind of cancer in my other breast. I got good treatment at Sloan Kettering and thank god I’m still here. That was 20 years ago. Atypical cells turn into cancer. Hope you are well and have a merry Christmas

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FYI Lobular breast cancer doesn’t show in a mammogram.

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1 reply
Nanny23 | @nanny23 | Dec 24, 2022

Mine turned into full blown breast cancer because my doctor left it there. He said he was going to watch it monitor it. Three years later was breast cancer lobular aggressive cancer. I pound up getting a double mastectomy and implants. They found a different kind of cancer in my other breast. I got good treatment at Sloan Kettering and thank god I’m still here. That was 20 years ago. Atypical cells turn into cancer. Hope you are well and have a merry Christmas

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2 replies
rebecca55 | @rebecca55 | Dec 23, 2022
In reply to @delormv "@rebecca55 thank you so much for responding and sharing your experience. After your appointment with the..." + (show)
@delormv

@rebecca55 thank you so much for responding and sharing your experience. After your appointment with the oncologist, would you mind sharing the recommendations? Thank you 🙏

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Yes, sure will!

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rebecca55 | @rebecca55 | Dec 23, 2022

Thank you! I am 67 and had the Ahl tissue removed. Now, I have to see an oncologist for more advice. My breast surgeon thinks Tamoxifen would be suitable for me. I will not take this because my sister had terrible side effects. I don’t think I want to do anything.

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drummergirl | @drummergirl | Dec 23, 2022
In reply to @rebecca55 "How old was your daughter?" + (show)
@rebecca55

How old was your daughter?

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She is 50

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rebecca55 | @rebecca55 | Dec 23, 2022

Yes, I had it removed. My surgeon wants me to see an oncologist about taking Tamoxifen. I am not doing this because my sister had terrible side effects. Scared but agreed to get breast MRI’s annually

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rebecca55 | @rebecca55 | Dec 23, 2022
In reply to @drummergirl "My daughter had ALH. They did a biopsy and they decided to watch it with 6..." + (show)
@drummergirl

My daughter had ALH. They did a biopsy and they decided to watch it with 6 month checks. It disappeared on its own, but obviously they continue to monitor.

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How old was your daughter?

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2 replies
rebecca55 | @rebecca55 | Dec 23, 2022
In reply to @delormv "@rebecca55 thank you so much for responding and sharing your experience. After your appointment with the..." + (show)
@delormv

@rebecca55 thank you so much for responding and sharing your experience. After your appointment with the oncologist, would you mind sharing the recommendations? Thank you 🙏

Jump to this post

Yes, sure will!

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rebecca55 | @rebecca55 | Dec 23, 2022
In reply to @colleenyoung "Welcome @rebecca55, I know being diagnosed with atypical lobular hyperplasia is scary. You kinda of feel..." + (show)
@colleenyoung

Welcome @rebecca55, I know being diagnosed with atypical lobular hyperplasia is scary. You kinda of feel like a ticking time bomb. I know fellow members like @amolson @wendles @elsie37 @dmart37 @smaac001 @keepshining2003 @jdriver @leesal123 and @delormv have been there too.

I'm glad that you are being referred to an oncologist to discuss your options for treatment and monitoring. Be sure to share your fears and concerns about take tamoxifen. They can carefully lay out the risks and benefits of taking the medication or not for you specifically. As your mind starts to race, making notes of questions to ask can help make that worry into something constructive to help you prepare.

I hope you have family around you for the holidays and it will help to distract you while you wait for your appointment.

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Thank you for your reply. My sister had breast cancer and was prescribed Tamoxifen. She became very depressed because of all the side effects. She was put on an antidepressant and made it worse. Since I have atypical lobular hyperplasia, I am not going to take this but still looking for a different medication without side effects. Wish there was a natural medication.

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